It’s been a while since I’ve posted a personal update and I have quite a bit to share. I’ve been getting a number of messages lately inquiring about my progress with the gastric neurostimulator (a.k.a. gastric pacemaker), so I’m going to start there. I’ll cover everything else that’s been going on, including my 3-week stay at the Mayo Clinic this summer, in a subsequent post.

Both the frequency and severity of the nausea, pain and vomiting are much improved with the new device. … While I cannot say that the Enterra device has allowed me to eat/live/feel completely normal (yet!), all in all, things are much improved and I’m very grateful.

That’s still pretty much true. In fact, while I was at the Mayo Clinic in July, my doctor turned my stimulator off for four days. While it wasn’t intended as an experiment, the device simply needed to be off for two diagnostic tests, it proved exactly how effective it has been at reducing my symptoms. From the time it was turned off until the day after it was turned back on, I was constantly nauseous. I couldn’t sleep. I didn’t want to eat. I quickly remembered how all-consuming the nausea used to be.

While it was a miserable few days, I’m actually glad I had the experience. I’ve been struggling with frequent flare ups over the last several months and I was starting to question whether or not the pacemaker was helping. I can now say without a doubt that it’s providing a great deal of symptomatic relief.

Despite the way it has been depicted by the media, the device is absolutely not a cure for gastroparesis. It’s a symptom-management tool. It has significantly alleviated the constant nausea and stomach pain that I used to experience. That’s not to say I never have nausea or pain, but it’s nowhere near as frequent, severe or long-lasting as it was prior to surgery. I’m also sleeping better than I have in years; even when I don’t feel well, I can sleep through the night now. In addition, I’ve gained some weight and overall my body seems to functioning better.

All of that said, I still have symptoms on a daily basis, including severe fullness, bloating and regurgitation. I cannot eat a normal diet, though I certainly have a little more wiggle room than I did prior to surgery. Surprisingly, there’s a bit of a downside to that extra freedom.

Without the constant nausea, I have more of an appetite. And because food makes me less sick and for a shorter amount of time than it did before, I’m more adventurous. Both of those are good things, of course, except that there is a very fine line between safe and not safe and one bite too many can result in agonizing fullness, pain, bloating and vomiting. Basically, it’s easier to get myself in trouble now!

It took some trial and error to learn that while I can tolerate a little more fat and fiber due to the decreased nausea and pain, I still have gastroparesis and food digests just as slowly. That means I have to keep careful track of how much fat, fiber and overall volume of food I’m consuming and consistently stay within my personal limits.

Note: I think it’s worth mentioning that my small bowel and colonic transit are both markedly delayed now and that is most likely contributing to my overall symptoms. I imagine if that weren’t an issue, I would notice an even greater benefit from the stimulator.

Bottom line? That gastric neurostimulator/Enterra Therapy doesn’t work for everyone. It’s not a miracle and it’s most certainly not a cure. But after having the device for eight months, I can honestly say it’s the best thing I’ve tried for symptom management and I’d do it again in a second.

Note: I’ve received several messages asking how much swelling is normal, so I’m including photos from the first several weeks post-surgery. As I mentioned in my first post-surgery post, I had a ton of swelling but it wasn’t an issue in the long run. I didn’t have nearly as much pain after the second surgery as the first one. After the first surgery, I couldn’t stand up straight for several weeks. Based on the number of concerned emails I get, I really don’t think that Medtronic or the surgeons are doing a proper job preparing patients for how they will feel after the surgery. Of course, I encourage anyone who is concerned about their own pain, swelling, etc. to talk with their doctor.

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41 Responses to “Update: Gastric Pacemaker”

Posted by:Tamara

October 2nd, 2010 at 3:45 am

Crystal,
I too had the colon marker test and small bollow follow thru study test like you and have been dxed with Global Colonic Intertia. It still seems to be an issue with me as well, and I wonder which meds I should be taking now that I have the pacer placed. I’m not sure if med dosage should be switched around or if meds should be added/changed I still take Misoprost and Amitiza plus I’m on 12 domperidones daily. All these pills! They’re enough to drive ya crazy!! Are you still taking domperidone or Reglan since pacemaker placed? Have they turned your device up in last eight months? If so, did the sharp pains from the leads come back? I know everyone’s different, but just curious. Thanks again for answering all my “neurotic” questions, it really is nice having your website to go to when I’m wondering about things. – I go back to Virginia Mason to see Doc and I think because I’m needing to take so many domperidones to stay sypmtom free, he’s gonna want to turn it up.,that’s fine, I just hate those zaps I had so bad first 4 weeks & still get once in a while. Im five week post today and doing well but stomach STILL aches like crazy and swollen in evenings. I have two small kids, I think it may slow down my healing…busy busy busy! Thanks again for talking to me Crystal, I appreciate it!

Posted by:belinda

October 3rd, 2010 at 12:39 am

I have been very sick with idiopathic gastroparesis off and on (mostly on) for 6 or nearly 7 years and am only just now learning about the possibility of a pacemaker that would help! I delighted with the possibility that it may elevate some of many symtoms. I am currently in a flare that has lasted just over 4 months – have lost over 40 pounds and I have had a G-J feeding tube for 5 years. When I am in a flare like now I am not able to take any food in orally and very limited water. I am hydrated and fed by the tube in my abdomen.
I have a great gastrointerologist who has referred me to a doctor right here in Seattle where I live who works out of the Virginia Mason Hospital that is literally right down the street from me. My chart notes have been sent already to the surgeon and I am awaiting a reply about whether I qualify for further study resulting in the placement of this gastric pacemaker.
I miss chewing – the texture and of course the taste. I sure hope medicare/Medicaid covers this and that I’m considered a candidate for it.
It’s also very nice to know that I’m not alone with this disease – until reading this today I had never met anyone else. Thank you.. comments? :o) Belinda – in SEattle

Posted by:Crystal

October 4th, 2010 at 1:04 pm

Hi, Tamara. I think it’s really up to each individual patient and their doctor to decide whether to continue, change or discontinue medication after having the gastric pacemaker placed. Issues with colonic transit obviously complicate the issue, since what’s going on down the line certainly affect the symptoms and motility of the stomach. I don’t take any medication for symptoms now other than Zofran, as needed, which ends up being 3-4 times per month. Neither Reglan nor Domperidone were effective for my stomach symptoms; same for Amitiza with the colon. The only medication that ever really helped (with both) was Zelnorm, which is no longer available.

I have had my settings adjusted once since the device was placed, though I didn’t notice any difference in my symptoms afterward. It’s my understanding that there are several different ways to adjust the settings and each doctor may have a different way of going about it. My doctor is very conservative and prefers to do things slowly. Back to your questions, I didn’t experience any pain at all after having my settings adjusted (either with this device or the first one, which I had adjusted a few times, as well).

Hope that helps! If you have more questions and would like to schedule a time to talk about them “live,” just let me know. Take care of yourself!

Warmly,
Crystal

Posted by:Crystal

October 4th, 2010 at 1:08 pm

Good luck, Belinda! The gastric neurostimulator isn’t a cure, but it’s a really effective symptom management tool for many GPers. Wishing you the best!

Posted by:T. Johnson

October 4th, 2010 at 3:48 pm

Hi Crystal

update on my boyfriend. He just had surgery last week on Thursday.
Because he is such a complex case there were so many concerns from his drs.
I little short hisotry :My boyfriend had a heart transplant 8 yrs ago, now the heart is failing so the cardio dr implanted an ICD about 6mos ago. He has CHF. so there were many concerns whether or not the GES will interfere with the ICD. The reps from Biotronix who made the ICD came out to test before and durning surgery. His surgeon came out and told me that the surgery went better than expected and I am thankful for that. No problems so far between the 2 were detected. THANK GOD.
RECOVERY TIME: for those who are thinking about doing this I want you know some things. The PAIN is bad so brace yourselves! Now I don’t know if it just my boyfriend who can’t handle the pain or what. But he is still in the hosptial because of he still hadn’t fully got up and walked, I told him he had to bite the bullet and quit being a slave to the bed!
He also developed a fever that just won’t go away and that is a major concern for me. he said there’s alot of pain where the site is. I TOLD him that it’s to be expected, there is swelling at the site as well. to me this tummy looks really good! and I live an a upstairs apartment- NOT going to be fun when he gets released…
BUT he did have a bowel movement at 1am. ..which is good because he hadn’t went. ALSO – after surgery don’t eat anything but soup! do liquids. he ate a little bit of fruit and the pain was so bad he cried and cried. SO BE CAREFUL on eating.
By Saturday he was eating close to normal food and he said his stomach itself felt pretty good, and he only had zofran every now and then instead of every 3 hrs. I am happy about that. We know this isn’t a cure but I am hoping the very best for him and anyone else who does this procedure!
have a great day!

Posted by:Crystal

October 4th, 2010 at 3:59 pm

Thanks for the update!! I’m glad he’s doing better, though you’re right — it will take several weeks for him to recover fully.

A few thoughts for others who may read this:

- If you have a fever after surgery, you should contact your doctor. It may indicate an infection.

- Regarding what to eat after surgery: I was able to eat some easy-to-digest solid foods (rice krispies, crackers, rolls, toast) almost right away, so I think it varies from patient to patient. Do what you feel you can tolerate.

- The pain can be pretty bad at first, but I found that it subsided rather quickly after a couple of weeks. I opted not to take any pain meds other than ibuprofen and Tylenol since narcotics can further slow digestion and I only needed those for the first week or so.

Best of luck to your boyfriend! I hope he’s up and around soon!

Posted by:Tamara

October 4th, 2010 at 4:57 pm

Belinda, I sure hope the pacer gets approved for you and you can start to heal. Last fall I had a feeding tube placed as well due to weight loss and lack of nutrition. It bypassed the stomach and went directly to the small bowel. Is yours bypassing stomach as well? – I live in the pacific nw and traveled to Seattle’s Virginia Mason so I know exactly who the GI is and the surgeon-very excellent docs and a wonderful facility all together. Good luck to you and keep us all posted-we feel your pain! – If you can manage to get fluids down, try a McDonalds Frappe and/or Jet teas from espresso stands. I lived on ‘em! (:

Posted by:Janine

October 13th, 2010 at 2:31 am

I have found so much helpful information on this site and I want to thank you for all that you do. I was wondering if your colonic motility issues were caused by the surgery or if you had those to begin with. I am scheduled for the surgery Dec. 15th. I am excited and apprehensive. My GP was caused from nerve damage after having my gallbladder removed. I am soo afraid that I will end up worse off after this surgery than I am now. At the moment my intestinal motility seems fairly well controlled by 250mg of magnesium daily. I just dont want the pacer surgery to help my stomach motility and slow my intestines.

Thanks so much,
Janine

Posted by:Crystal

October 14th, 2010 at 1:49 pm

Hi, Janine. Thanks for the kind words As far as I know, my colonic motility issues have nothing to do with the gastric stimulator surgery. I was definitely having trouble before the surgery. I think if anything the symptoms are just more noticeable now because the nausea is so much better, I have more of an appetite and a lot more leeway with my diet GP-wise. Hope that helps!

Warmly,
Crystal

Posted by:Crystal

October 14th, 2010 at 2:25 pm

Hi, Janine — wanted to share this other reply that came in from Tamara:

Hi Janine, I know you addressed this email to Crystal, however, i too wanted to comment. I recvd my gastric pacemaker on Septemer 3, 2010. I am doing pretty good and honestly feel it was the best move I could have made since being stricken with this horrible condition. – I’ve went from throwing up 3-4 times a day to once a week, however, nausea is still an issue after meals. I too have motility issues, global colonic intertia, which means nothing moves! – I had it before the gastroparesis, but it did get worse when my stomach quit working. I have found since I had the pacemaker turned up 1 volt last week and with getting meds better controlled with my GI Doc for chronic IBS my bowels are better! I think you’ll find when you get your stomache moving w/ the pacer, everything starts moving better. – The pacemaker is a work in progress for sure, you need to have it turned up and tweeked to get it where it benefits you, but I hope you get the relief I am feeling-today is the 1st day in almost 2years I am up, awake, got my kids off to school and actually feel like staying up and getting on with my day! It’s a great thing, think positive, the pacemaker will help you! – Oh and I ate CHINESE food last night, enjoyed it sooo much and didnt get nauseated or throw up!! Yeahh! Good luck to you and let us all know how you do.–Tamara

Posted by:Janine

October 14th, 2010 at 3:01 pm

Thank you both so much for your replies. I am glad to hear you have found relief from the surgery. I really appreciate you answering my questions. I am now really looking forward to the surgery….well not so much the surgery, but the benefits after I am sure that I will be asing questions once all is done. Thanks again. Best wishes to you all, Janine

I had my “Pacemaker” implanted on Tuesday (2 days ago) and I can tell you that I am so happy that I took this step. I was able to eat almost immediately (about 12 hours after surgery) and have not had any nausea. To me this is amazing sine I, too, was vomiting 3-4 times a day with a good day being 1 time.

The pain from the surgery is unbelievable. I was sent home with both a liquid codeine (6 hours dosage) as well as a morphine pill (as needed). I have needed the Morphine since the surgery but today less than yesterday.

As far as the surgery, it took about 2 hours and my doctor was wonderful. If you are considering this surgery, you should consider coming to Chicago ans having Dr. Enrique Elli with the University of Illinois – Chicago.

The real benefit from Dr. Elli is that he was able to schedule me, from first visit, within 2 weeks.

While I am sure some of the symptoms will come back (it is NOT a cure) but I will definitely be better than it was.

The other things is to make sure your insurance covers the device and the surgery. Luckily mine did (especially since the surgery cost about $70,000). While I will not be super pleased with paying 10%, it is a small amount to pay for having my life back.

Posted by:Brandy

October 30th, 2010 at 11:46 pm

I am so glad that I found this site. My husband is a 26 yr old diabetic since he was 5. This caused him to develop GP about a year ago and has spent most of that in the hospital. It was comforting to find that there are so many people who can relate with him. He has also not wanted to get this surgery because he is scared it will get worse. I think showing him this site will help him not feel so alone. Maybe even change his mind on getting the surgery to help him get some f his life back.

Posted by:Crystal

November 1st, 2010 at 1:56 pm

Hi, Brandy. Glad you found us, as well! Sorry to hear about your husband’s struggle with GP. Regarding the gastric pacemaker surgery, I’ve actually heard that the outcome may be even better for diabetics than idiopathics. Of course, it’s not for everyone and it’s certainly not a cure. But definitely an option worth looking into. Do his doctors think he is a good candidate for the device?

Warmly,
Crystal

Posted by:Crystal

November 1st, 2010 at 1:59 pm

Hi, Jim. Thanks for sharing your experience! Great suggestions, as well. Glad you’re surgery went well and you’re already noticing an improvement. The pain will get better after a week or so. As I’ve said before, I really don’t believe that most doctors are properly preparing their patients for what they’ll experience after this surgery.

Good luck and please keep us updated as to your progress.

Warmly,
Crystal

Posted by:Bonnie

November 6th, 2010 at 10:15 pm

Hi Crystal,
I am so glad I found this site! I was diagnosed with GP last year. I am Idiopathic. Not sure how or why this is happening to me. All I know is that I donated my kidney in September 2007 (obviously perfectly healthy at that time) and have been sick ever since.

I had G tube and a J tube placed in January of this year. The G is for draining (if needed) and the J tube is put in my lower intestine and used for my nightly nutrition. I live in Ohio and was being treated at the Cleveland Clinic but am now being treated at Indiana University. There are great doctors there.

I have been told before I am not a candidate for the pacemaker. But the doctor at IU says I could be. I’m just not sure I am up for another surgery. The kidney donation really took a toll on my body. Also since the transplant I have fibromyalgia.

I am taking Remron (sp ?) and Domperidone and they work so so. Most of the tome I am just pretty much miserable. I have had 2 PIC lines to avoid dehydration.

I will keep thinking about it though… Thank you for this site!!!!!!

Many blessings!!

Posted by:Crystal

November 11th, 2010 at 4:41 pm

Hi, Bonnie — Passing along this comment from Tamara: Bonnie–Hi my name is Tamara and I know you wrote to Crystal but I too have GP idiopathic and I feel so badly for you. I had the feeding tubes nasal and J placed for nutrition as well and know how miserable you feel. Sounds like you’ve done a wonderful thing for someone else and now it’s caused you some misery, god bless you. Hopefully you’ll start feeling better soon and the docs youre seeing will get you some relief. I got the pacemaker placed 2mths ago in September and am doing better, not perfect by any means but my quality of life has improved…I hope your new docs can get you hooked up with the device if that’s the direction you decide to take. Ide love to keep up on how you are so keep Crystal up to date and I can stay updated as well. Just to and remember you are not alone even though it feels like you are sometimes!

Tamara

Posted by:Crystal

November 11th, 2010 at 4:45 pm

Hi, Bonnie! Glad you found us, as well Your story is heartbreaking — as Tamara said, you did such a selfless thing and ended up with such horrible consequences. I’m curious as to why the docs at CC didn’t think you were a candidate for the stimulator. Do they feel you’re too weak for the surgery?

Please do keep us updated. Hang in there and good luck!

Warmly,
Crystal

Posted by:AnnMarie Riehm

November 27th, 2010 at 6:53 pm

Hi, has anyone had any problems with the pacemaker wires pinching them? I am having surgery on December 2nd for the surgeon to coil my wires because they are pinching me. I can’t lean over, reach to the left or right, pain when turning over in bed, etc. I was wondering if anyone else has had those problems.

Thanks,
AnnMarie

Posted by:Debra Lawson

December 2nd, 2010 at 4:34 am

Hello everyone, I just happen to come across this site and read your postings, wow I was feeling so alone with my gaseroperisis and when I saw I wasnt it brought tears to my eyes to read some of your historys, I am sorry anyone has to go through what we are all experiencing. I recieved my Enterra device October 13th at the Mayo in MN and I have had ups and downs but I can say that i am not taking my Zofran as much as I was. I still have symptoms of nausea and pain but before my surgery it was awful. I work full time and have a great career in Health Care and stay very busy so as most of you know nausea, pain and vomiting is a huge block in our everyday lives. I really am grateful my insurance approved me for the device but it took a year to get it approved. I am still have quit a bit of tenderness in the surgical area and still some swelling but I am back to work and eating better. ( I did get to liking those strawberry Ensures… ;o) anyway I wish all of you well and hope all works out with your device or choice to have one. I look forward to keeping in touch with everyone since we all seem to be in the same boat. Thanks for sharing for people like me.

Posted by:Crystal

December 2nd, 2010 at 1:15 pm

Hi, Debra! So glad you found us My stimulator was put in at Mayo MN, too. Who is your doc? I see Dr. Fox, though I’ve also seen Dr. Kraichley on occasion. Did Dr. Swain implant your device? He’s such a doll — definitely the nicest surgeon I’ve ever met! I’m glad to hear that you’ve noticed some improvement. It’s been almost a year now that I’ve had my device and while I still deal with symptoms regularly, it’s certainly much better than it was. Do you find that you sleep better? That has been one of the biggest benefits for me. That and a huge reduction in nausea. Sending you lots of good wishes!

Warmly,
Crystal

Posted by:Crystal

December 2nd, 2010 at 1:21 pm

Hi, AnnMarie. I see that your surgery is today — good luck to you! I hope that the surgeon is able to fix the problem and that you’ll be feeling better very soon. I haven’t experienced any pinching from my wires, but I did get this message for you from Tamara:

Anne Marie: I’m almost 3months post pacemaker implant and am achy all over in the abdominal area most of the time with some pinching as well. I feel the same way when it comes to turning over in bed and moving around. Im hurting after I do anything. In the evenings I usually have to lay with a heating pad on my back because I hurt so much in the pacer area extending to my back. Iv’e never heard of this before and wonder if it has anything to do with the way I feel. How are you besides the problems with the wires? Do you feel like the device is helping you with the gastric emptying? I wish you luck with your surgery and would like to hear how you do. Look forward to hearing…Tamara Heydt

Posted by:AnnMarie Riehm

December 5th, 2010 at 2:06 pm

Thanks Crystal and for the message from Tamara. I had my surgery on Thursday and I am doing ok. My abdomen is swollen and it hurts, but hopefully it will make things better. Tamara-I had the pinching and pain when turning over in bed, moving around, bending etc. So, hopefully now that my surgeon re-routed the wires it will be better. I will have to let you know when the swelling and pain decreases and I can move around better. I feel the pacer is helping a little. Some days it helps with nausea and vomiting, and I am able to try a few solid foods a few days a month. But then I usually get really bad again after trying solids. But I guess any improvement is good. How are you doing with yours? I will definately let you know if I am better with the wires moved as soon as I can. You can always email me at amriehm@hotmail.com or I am on facebook also.
AnnMarie

Posted by:Libby

December 15th, 2010 at 4:05 pm

I am so happy to have found this website! I was diagnosed with idiopathic gastroparesis in the beginning of november after having been sick with a mysterious illness for over five years. So far, I have not been responding to medication. I have taken Reglan, Erythromyacin, and Domperidone. Today I have an appointment with the ARNP in my GI’s office to discuss the next step. I am apprehensive about the gastric pacemaker because I don’t want to feel worse than I do now, which is pretty bad. Also, reading about the different adjusting problems that folks have with the pacemaker makes me nervous as well.

I’m glad to have found this small community of people as I have been feeling very alone with this condition. I wish that there were support groups or something in my area for people like me, thank goodness for the internet!!

Posted by:Crystal

December 15th, 2010 at 4:10 pm

Hi, Libby. Welcome! Sorry to hear that you’re struggling with GP. You are certainly not alone!

Regarding the stimulator, I’m a bit worried that I’ve done a disservice here because you’re not the first one that has said that reading the posts/comments has made them less inclined to consider it. While it’s true that it doesn’t work for everybody and there is initial pain/discomfort from the surgery itself, I know way, WAY more people who are glad they had the surgery than who regret it or think it’s made them worse. Of course, it’s not a cure — but it has drastically improved my quality of life. Even a small improvement can make a huge difference; I think most others who have the device would agree. It’s allowed me to sleep better and better nourish myself. I’ve gained 10-15 pounds and I look much healthier. I still have GP symptoms everyday and have to manage my diet carefully, but even with that and the hiccups in adjusting it, I wouldn’t have this thing taken out for anything!!

Just wanted to clarify that.

Warmly,
Crystal

Posted by:Libby

December 15th, 2010 at 7:36 pm

Crystal – Thanks for your insight on the pacemaker. After visiting the nurse practitioner in my GI’s office the recommendation is going to be made to have the procedure done at the Virginia Mason Hospital in Seattle (about 4 hours away from where I live). I have mixed feelings, but right now there isn’t really another choice for me. The next step is to see if I can get approved for Medicaid to pay for the surgery, as my current insurance is trying to tell me that this is a pre-existing condition. Just another battle on my long list….

-Libby

Posted by:Debra Lawson

December 17th, 2010 at 4:54 am

Hello Crystal and eveeryone, Yes I had Dr. Swain as my surgeon and I agree he is the nicest Surgeon. He has shaved and I allmost didnt recognise him when I seen him last month. Dr Kraichley is my Doctor. I have been at my local hospital twicw in the past month with extra stimulation that has caused me chest pains and shortness of breath, of course the local hospitals here have no clue as to what to do, it becomes frustrating. It just so happens a Doctor about an hour and a half from here has the equiptment to do adjustments and that is all I need to feel better. I do sleep better and I do still have symptoms as they are trying to find the right frequency but I wonder do you feel the stimulation to where at times it causes you shortness of breath and chest pains? once they decrease the voltage the symptoms go away. I do eat better now and take less Zofran. I don’t want to loose this device as long as I continue to be better than before, so I am hoping this is only temporary. Thanks and i am so gald to meet you. My e-mail is blessed71198@yahoo.com for anyone who would like to e-mail me. Hope all is well. Debra Lawson

Posted by:Deboah shipley

March 18th, 2011 at 7:44 pm

Hi my name is Deborah.. I live in Colorado.I have severe
case of GSatroparesis. They have tried all different mess on me .I
had areally bad allergic reaction to the dome medicine .I Can’t
hold down any food or liquids .I was referred to a specialist in
Denver and is going to do the surgery for the pacemaker on April
6th.I am excited and. Nervous at the same time .PLease anyone help
me to know what I have to look forwards to good and bad about. This
surgery.

Posted by:Crystal

April 14th, 2011 at 11:55 am

Hi, Terri. It’s the same. If you haven’t watched the two videos I posted about the device, that will provide you with much more info –

I am a diabetic with kidney failure on dialysis with gastroparesis and othostatic hypotension…lots of issues. We live in Arkansas and from what I am reading I would almost have to move to the state where the procedure was performed for about a year. The closest I had found before reading your posts was Cleveland Clinic, but now I read maybe the University of Indiana. I have two initial questions that maybe someone “listening” might have some insight….What makes a good candidate? How do you determine if Medicare will pay? My supplemental insurance was cancelled when they finally “discovered” I was a dialysis patient. Medicare tells me they can’t find the procedure in their “list”. Cudos to all of you who have weathered the storm.

I got my Enterra (pacer) implanted in October 2010. I live in Chicago and there is only 1 surgeon that does the procedure in all of Chicago. His name is Dr. Enrique Elli at the University of Chicago Medical Center. I had Medicare and regular medical insurance that paid for the procedure/device. I met Dr. Ellie on a Monday, on Thursday had a Gastric Emptying Study (GES) and actually had the procedure done 10 days later. Dr Ellie does a fair number of these implants per year (almost 70 last year) and didn’t have any issues about getting paid for the procedure. Any doctor that does this frequently will know how to submit the claim for approval. If they don’t know how to make it happen, find another doctor. The total cost for my procedure (surgeon/device/hospital) was a little over $160,000. Dr.Ellie submitted all of the paperwork and I ended up paying a grand total of about $290. You read correctly, $290. I have had meals that have cost more!

As far as being a “good” candidate, I am under the impression that you are either qualified or not depending on the Emptying Study. During my study, I only had 36% of the food actually leave the stomach in 4 hours. I am told that a normal person processes 100% of food eaten in under 1 hour.

About the procedure, you have to understand that it is NOT a cure. I repeat, it is NOT a CURE! I went from vomiting 4-5 times a day before the implant to only being nauseous enough to vomit only 1 times ever 2 – 3 weeks. I do feel some unsettling feelings when I eat, and I take Marinol (artificial Marijuana) when it gets a little too uncomfortable for me.

When I had the surgery at 7am, I was awake and out of recovery by 9:30am or so. The pain was indescribable. They make two tiny incisions (endoscopic) and one major (7 inches or so) where the actual device is implanted. The first day I was begging for Morphine every 2 hours or so. The hospital was wonderful and gave me anough to get through the night.

The next day they asked if I would be willing to just take Motrin for the pain and I agreed. By noon I was feeling better and wanting to eat! I hadn’t wanted to eat for the previous 9 months so this was a big deal. They gave me liquids at lunch and they told me I could go home if I could hold down food. At dinner, they gave me 1/2 roast chicken and rice. I ate it all and asked for seconds! By 9pm, I was in the warmth of my own home.

I did see Dr. Ellie a week after the implant for a “post surgical checkup” and he bumped up the settings a little bit (he said less than 2% change). I am due to see him at the end of the month but I am feeling good enough that I am going to put it off until June if I can!

The only downside for me is the post surgical scars are really pretty ugly. The device sits just under the skin outside the abdominal muscle. You can see/feel the device pretty easily. Now, I will never be able to an underwear model (I am 6′, 205lbs so I guess I was never going to be one anyway!) and I feel really self conscience now not wearing a shirt. Sometimes I bump the device with my arm and it creeps me out a lot!

Now, I realize that I am EXTREMELY LUCKY in regards to this treatment. There are some people that have terrible pain for weeks/months after the surgery. Some people also have some issues of pain/discomfort because the device is turned up too high. I am a bulldog type person and I refuse to allow things to get the best of me. I am pure blood German and stubborn is my little name.

Now, the fun things about the Enterra is that you will never have to go through the x-ray machine at the airport. You will have to have the TSA person give you a “Full Body Pat Down”! You, also, won’t be able to have MRI’s anymore. The funniest thing for me is that every time I go to Walgreens, the metal detector at the door goes of when I enter and when I leave. I don’t have the issue at any other store but the people at my Walgreens know me now so they don’t even bat an eye when the alarm goes off!

I know i have rambled on a lot but nobody told me anything before I went through this. I just want to make sure you have all of the information you need before you make such an important decision. I would have it done 10,000 times because of the dramatic change it has made in my quality of life. In the three months before my implant, I lost 57 lbs. Since, I am not gaining but I am not losing either. Not a bad trade off in my mind.

Wishing you the best,

Jim

Posted by:Crystal

April 15th, 2011 at 2:28 am

Jim, thanks for taking the time to share your experience. I agree that most people are not well prepared and it’s important to have all of the facts and hear a variety of personal experiences before making the decision.

I do want to clarify a few things:

- The procedure does not always cost that much. I had two devices (one broke) and two surgeries, one of which included a hospital stay, all at the Mayo Clinic and the total was $101,000. The cost without the hospital stay is typically about $30,000.

- The emptying scan is not the only consideration in terms of who is a good candidate. Good candidates have demonstrated gastroparesis that is refractory to all other treatment options. Diabetics are considered some of the best candidates, as they tend to have the best results. For idiopathics, it’s a little harder to predict the response but there are a few factors to take into account: since the stimulator is indicated for the treatment of nausea and vomiting, those whose main symptom is pain may not be considered a good candidate. In addition, those who take narcotic pain meds are not good candidates. You obviously have to be healthy enough and strong enough to undergo general anesthesia. GPers should be evaluated by both a GI doc and the surgeon in order to determine if they are a good candidate for the device.

- Regarding the emptying study, a normal result is actually considered to be less than 10% remaining (at least 90% emptied) at the end of FOUR hours.

- My surgical scars, and most of the others I’ve seen, are much smaller. I have two that are about an inch long and one that is about 2 1/2 inches long.

Posted by:Janice

May 10th, 2011 at 4:37 pm

I am so glad I found this site. I feel like I am all alone with this. No one understands how I feel and why I can’t eat like a “normal” person. My GI doctor just referred me to a doctor about getting the pacemaker surgery done. A few years ago I had a small episode and was put on Reglan and it helped and I went off the medicine. Then I got pregnant. While I was pregnant I ate everything! I didn’t have any problems and then after I had my son I kept on having these attacks. My gyno told me they were anxiety attacks and put me on Zoloft. After about 30-40 attacks I ended up in the hospital with gall stone attacks. I had so many attacks that I have severe pancreatitis. My pancreas had already started to eat itself and my liver was shutting down. After I got better I had my gall bladder taken out. Since then I have had nonstop problems with my stomach. I wast able to eat much of anything but just a bite or two. I was put on Reglan again but this time it didn’t do anything. They doubled the dose and still nothing. I was then put on Domperidone and it was working very little so they doubled it. Now I am able to only eat twice a day. I still feel full all the time and I can’t sleep good. I am only working one day a week because that is all that I can take at this time. I stay at home with my 15 month old son and it is hard just taking care of him. I feel bad because we are so behind on all our bills because we are used to two incomes and now just rely on one. I don’t know what to do. I want to get the surgery but I don’t know if it is going to help me. I want to get better so I can better take care of my son and to be able to go back to work. I just want to feel “normal” again. Does getting the pacemaker help with eating more and feeling better? I am just so nervous to get another surgery and it not be worth it. Please help! Thanks, Janice.

Posted by:Crystal

May 12th, 2011 at 11:52 am

Hi, Janice. Sorry to hear all that you’ve gone through. The gastric neurostimulator helps with nausea and vomiting. In the vast majority of cases, it doesn’t increase gastric emptying. That said, I can tell you personally it has drastically improved my symptoms and I’ve gained 10 pounds, I sleep better, and I function better in my day-to-day life. If you haven’t done so, I’d check out the videos I posted about the treatment. I go into quite a bit of detail about what the device does and doesn’t do and what results I’ve noticed.

I wanted to let you know that I recently had a sacral stimulator (FDA approved for constipation just a few months ago) placed for part of my treatment for my global inertia problem. Although, I am not getting the best results I could be getting from the stimulator I am hearing bowel sounds which is amazing. I had to do things a little backwards waiting on on my doctor’s availability. I am awaiting my appt. in Nov. for the gastric stimulator. Just thought I would mention this because I know you also suffer with the global problem.

Posted by:Kate

September 30th, 2011 at 4:36 am

My son was diagnosed with GP in 2009. After 5 months of medication the symptoms were gone and the stomach was emptying normal. He was healthy and fine for almost the last year. About a month ago my son started feeling nauseau again and I took him back to his Dr. After several test, the GP is back. I thought my son had been cured of GP and never expected it to surface again or know why it has. He is now on 14 pills a day and the doctor says he expects it to be healed again and will see him in 3 months. from what I am reading,it doesn’t sound like this condition is ever really cured. Can someone give me insight as to what to expect..Is it ever cured?
Thank you

Posted by:Crystal

October 3rd, 2011 at 5:43 pm

Hi, Kate. Sorry to hear that your son is struggling with gastroparesis again. While I can’t offer much insight into what caused your son’s symptoms to return, to answer your question: yes, gastroparesis can absolutely resolve permanently in some cases. Particularly if it’s post-viral. I’ve actually heard of that more frequently than hearing about cases of complete remission followed by a return in symptoms. Have they checked for underlying conditions that might be causing the flare ups? Hopefully your son’s symptoms will resolve again soon! Best wishes!

Posted by:Jamie

February 26th, 2012 at 3:37 pm

My doctor is convinced that I need to have a gastric stimulator. I have been a type 1 diabetic for 40 years. I go for months being able to eat anything I want – burgers, steaks, fried foods.
I sometimes have nausea with rapid changes in blood sugar but vomiting episodes happen in the morning and does not seem related to what I ate the night before. I have gotten sick after a dinner of chicken soup. These episodes of vomiting seem tied to my hormonal cycle and come with pms (including anxiety, headaches, constipation, insulin resistance) Sometimes I get through using zofran, ativan, phergan but I now am stuck in a cycle of hitting a wall every 2-4 months where I cannot stop the vomiting and have to be hospitalized for dehydration. At those times my blood pressure goes crazy and anti nausea drugs barely work.
I am sure I have some gastroparesis but my symptoms don’t seem typical in the way that I can eat anything for months. My biggest concern is that I had nausea/vomiting incidents prior to 2007 and the doctors were so focused on gastroparesis that they did not diagnose heart disease and I had a heart attack. After getting 4 stents in my arteries, I had no nausea or vomiting episodes for 6 months. This is when the 2-4 month cycle started.
I have been on reglan/domperidone but they don’t prevent the uncontrollable vomiting episiodes.
I don’t see how gastroparesis could just go away, only occur first thing in the morning (if I make it to noon, I am good to go for the day) I feel like maybe something else is going on and no one will consider any other diagnosis.
How do I evaluate whether this device will work for me? My biggest fear is that I cannot stand tags in my clothes. I wear an insulin pump and continuous glucose meter attached to my stomach and they are a challenge. I don’t know if I can cope with feeling this device.
I appreciate your input.

I have loved your book over the last 15 months of this crazy illness. I have tried every med known with minimal to no relief. I am a nurse and mom of 5. This illness has turned our lives upside down. I know that on the other side there is a reason and it will be to help others going through similiar issues. It amazes me how docs who are brilliant refuse to see the whole picture. I have had statements like, “well the meds SHOULD be working”. Or just drink 6-8 ensures a day and you will be okay” Really? Milk/protein does not settle well on my tummy. Ensure clear sometimes will stay down. But, I have made the decision to go forth with the pacemaker surgery on Tuesday of next week. Dr. Lahr at UMC is performing the surgery. The odds for relief even at 50% better would be fantastic! Thanks so much for your information and encouragment and sharing your story with those of us that at times feel alone. You can see some of my story on Caring Bridge Laura Hunter.

Posted by:Jane Hall

March 22nd, 2014 at 6:43 pm

Laura, I hope you are doing much better since getting your pacemaker last January. Dr. Lahr performed both of my pacemaker surgeries and also another surgery for me. He’s a fantastic, caring doctor. I’ve been a patient of his since 2002, when he was in Charleston, SC. I drove to UMC just to see him and for the surgery, so I trust him and his advice. He has written many books on Gastroparesis and other stomach problems. Please give us am update, as I tried to find your story on the Caring Bridge and couldn’t find it. I missed your post last year and am just know seeing this. I’m having a LOT of constipation issues and am going back to re-read as many posts and questions and resources on this site as I can. This website is the most informative around. Crystal is a super resource and I’ve learned so much about GP, I feel sometime I ask questions the Drs. can’t answer. Just this week a Pelvic Floor specialist told me I needed to get more fiber in my diet and said to take 2-3 fiber con pills a day!!! My hubby looked a me and we rolled our eyes-unbelievable. Best of luck with your pacemaker. Simply put-It SAVED my LIFE.

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